Yesterday I was supposed to be going out for afternoon tea with two good friends, Kay and Annette. We had planned to go to a large garden centre where we could have sat outside enjoying the afternoon sunshine. It was a special outing as Kay had been housebound for several months since last August and Annette has recently recovered since going through, what can only be termed as, an onslaught of medical problems. She really had been through the mill and we were all so pleased to be able to finally arrange a get together. I had been so looking forward to the three of us having chats and generally enjoying one another’s company. Unfortunately though my own health issues decided to play up and so I had no option but to cancel.

It all started last weekend when I had the strangest experience which I must admit at the time, I’d wondered if it could spiritually based. I suddenly lost some of my vision and then saw the most wonderful iridescent colours, sparkles and light beams. It was seriously like something out of a science fiction movie. Diamond shaped lights zooming around the room and lines of the brightest golds pinks and blues. It was a little like an indoor firework display but without the noise. It lasted about fifteen or twenty minutes and then just stopped. I thought it was rather odd, but had no other symptoms or pain and as I had been talking about spiritual matters at the time I did wonder if it was just one of those peculiar things that has happened to me from time to time. I had previously, many years ago, taken myself off to the opticians when I had experienced some very unusual colours and odd visuals but had that time been assured that my eyes were fine. I am sure now that spirit were involved on other occasions, but on Sunday it was totally different to anything I’d had before.

On Monday I had to see my doctor about an unrelated matter. At the end of the consultation I mentioned the light show I had seen. I fully expected her to be dismissive and tell me it was nothing to worry about, but instead, with almost a look of panic, she told me I should go straight to eye casualty. She said that I may have a detached retina. Goodness, I was more than a little shocked. My main concern was how on earth do they stick a detached retina back on! Is there some kind of eye super glue?

Thankfully when Simon took me to the hospital we quickly saw an eye specialist and he asked me my medical history (poor man!) and decided that it was more than likely that I’d had an ocular migraine. He said that I should go back and have a full examination the next day, but not to worry. When I came home I looked up the diagnosis and it certainly seemed to fit. The following day another doctor put what I would call ‘stinging liquid’ in my eyes to fully dilate them so that he could take a more in-depth look at the back of my eyes. He confirmed that everything looked fine and that he too felt I’d had an ocular migraine. I was told I shouldn’t drive and I was lucky that Kay drove me because when I came out my vision was all fuzzy and I couldn’t even see the curbs, let alone a cyclist I almost walked into!

My body never seems to want to behave ‘normally’. I have had what I call typical migraines since my late teens and over the years have been able to manage them quite well with some powerful medication and learning what works best, which for me is absolute silence, absolute darkness, absolute stillness and cold damp towels on my forehead and back of my neck. In more recent years I have been diagnosed with vestibular migraines which cause the most dreadful dizziness and vertigo but no pain and I have to take daily medication to try to avert them. Now I have the ocular version! A free light show and no pain. I know which one I’d choose if I had a choice!

So, I thought everything was fine. I came home from the hospital with my eyes looking like I was some kind of junkie. Simon just kept staring at me with my massive pupils, which I couldn’t see because my vision was still all blurred. I wish he’d taken a photo of me now because he said I looked so weird!

Typically though my body decided to react. Anything unusual and it plays up. I’ve done all the positive health affirmations for years. I have spent hours of my life saying out loud ‘I am well’, ‘I am healthy’, and various versions. I still do. I say it as if it were right now, not in the future. I should have a diploma for all the affirmation books, hints and tips I’ve read. I’m still hopeful that one day the words will suddenly slip into my subconscious and my body will sit up and take notice.

Today my twin Tina was supposed to be coming over for the day. I know how much our Fridays mean to her, and I just hate to let her down. She and I look forward to spending time together, no matter what we are able to do, even if it’s just sitting reading or listening to music. Our Fridays are special, we talk about our childhoods, our parents, our brother, our shared memories all of which are so important for Tinas recovery after her stroke. If she’s feeling up to it she might be able to peel a few carrots, which for her is a mega achievement, or even make a cup of tea. We take great delight in every step she takes along her path towards becoming more independent. Yesterday I was feeling so lousy I thought it only fair to warn her that I might not be up to her visit today, but ever hopeful said that I would ring her this morning to let her know for sure.

I had an early night after already sleeping most of yesterday, but even though I slept well I knew the minute I woke up that I would have to have another day hibernating, recharging my battery, if I was to get back to anywhere near my normal energy level (which is a pretty pathetic 4/10 compared to my pre-illness 10/10) . I dreaded ringing Tina and sure enough she was very upset and crying. I know she understood but her emotions are raw since her stroke. Very small things can easily annoy her or upset her and she becomes frustrated by her lack of ability to deal with matters which she would have not given a second thought to when she was well. I looked out at the beautiful spring sunshine and crawled back into bed. I do know that I am far luckier than a lot of people. I have been going through a good phase recently where I have been able to stick to most of my plans for several weeks. I have to organise everything with breaks and rests but by doing that can enjoy my life immensely.

In bed yesterday afternoon, with Maddie loving every moment of being able to lay beside me, I did think about my life before I was chronically ill. I wondered, health wise, if I had no option but to make a choice between my previous life or my life now which would I choose? I thought about it on and off for quite a while. Weighing up the pros and cons. One thing that most ‘well’ people do is take their health and energy for granted, whilst most unwell people make the most of every good minute they have. I thought about seriously wealthy people who waste their money and rarely value what they have, whereas people on a budget plan their spending carefully and make the most of every penny they have and truly value what they can afford.

I thought of the friends I have who accept me with all my limitations, who show such enormous patience when I sometimes have to let them down, who really care how I am and where possible make allowances for my limited energy. I also thought of the friends I used to have, many who sadly disappeared into the woodwork when I became chronically ill. My friends now are very different, more ‘real’, far more caring and also far more fun. I feel I am so lucky. I am rich in friendships and time spent with my friends is always so worthwhile. Would I have valued my friends so much before?

It’s tough to crawl back into bed when the sun is shining, but then many people are working, often doing something they don’t particularly like, and not even seeing the sunshine. Many people are trapped in their hectic lives, trying to be the best, have the best, striving to achieve perfection but never feeling they are succeeding. There I was curled up in my comfy bed with my beautiful dog by my side listening to gentle meditation music whilst a warm breeze wafted over me from the open window. Hmmm …. the choice would not be easy!

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I find it strange that we see-saw with our health, eg one up & the other down.
I suppose we’d be too much for the planet, both being well at the same time!
This too will pass, keep your faith & positivity. K xx